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A New Experiment

As I’ve noted before, I often feel like I’m conducting experiments in  how I raise my child.  Connor is not typical, nor is there any clear way to treat autism.  Thus much of how I parent is based on trial and error, collecting data, and performing experiments.

The new experiment for this summer is trying out a typical preschool.

Observation: Connor has entered a stage in his development in which he is mimicking classmates and other children he comes into contact with.

Problem: Given that Connor spends the majority of his time with other special needs children, he has begun to mimic symptoms and problematic behaviors of these other children.  His language also stopped developing, keeping it on par with classmates.  Connor has displayed frustration and displeasure in attending his regular special day class.

Hypothesis: Being around neurotypical children will encourage Connor to use more language and develop typical social skills, while reducing problematic behaviors.

Proposed Method of Research: Connor will attend a typical preschool, with a developmental program, two days per week.  Connor will also engage in extra curricular activities with typical peers, such as swimming lessons, play dates, and unstructured social environments (ie playing with unknown children at parks, beaches, etc.).  Connor will continue to attend special day class two days per week, as well as participate in a reduced ABA schedule, regular speech therapy, therapeutic horseback riding, and physical therapy/gymnastics.

Findings: TBA

Obviously when I was mulling over the problems and possible solutions in my head, my reasoning was not so clear and scientific.  In fact, I distinctly remember telling Connor’s psychologist that a large part of why I wanted to conduct this experiment during the summer was that I had “a gut feeling” that this was the right thing to do for him.  I’m hoping the science will back me up!

For the most part, at least in the most current research, the benefits of inclusion seem to outweigh the possible problems, but there are still causes for concern, still reasons to worry.  The recent research encourages me that this is right move for Connor, who is on the high functioning end of the spectrum.  And so far, Connor seems to be loving his new school! In class he isn’t speaking to much, and he has had a few frustrations, but at home I can already see some positive effects.  Just in the week since he’s started, Connor is using full sentences and spontaneous language more often than before.

Now maybe this is just a conincidence, and maybe it’s not.  Only time will tell.

Here are some articles on the benefits of inclusion:

Why Inclusion Benefits all Kids:

Benefits of Inclusion:

Maryland Department of Education list of Inclusion Benefits:



Autism and Sandy Hook

Like many Americans in the aftermath of the Sandy Hook Elementary shooting, I’ve been looking for answers. Initially I was eager for any kind of explanation.  I wanted the shooter to have something wrong with him, something off, something I could point at and say “Ah ha! That explains it!”  But as time passed, the truth sunk in.  There is never going to be an explanation sufficient to explain away such a wanton loss of life.

In the days since the shooting many writers, reporters, and broadcasters have thrown around the idea that the shooter had some form of autism and that may be at least in part to blame for his actions.  Theories ranged from “Friends of the family said he suffered from Asperger’s syndrome, a form of autism” to headlines that read “…shooter, may have had form of autism“, as if this explained everything or anything.  Thankfully, since similar theories were espoused in the aftermath of the Denver theater shooting, many parents, professionals, and even some writers themselves were ready to come out to say that these theories of autism have no relationship to the shooting at Sandy Hook.

From a Yahoo news article that explores the many topics Americans are placing the blame on:
“People want immediate or simple answers when an unimaginable tragedy like this occurs,” Bob and Suzanne Write of Autism Speaks said in a statement on Monday. “Autism did not cause this horror. The profound tragedy of these senseless murders will only be compounded if it results in unwarranted discrimination against people with autism.”

But where does that leave us?  Autism Speaks and parents like myself are forced to come out with statements like this every time something tragically violent occurs at the hands of a disturbed citizen.

The shooter was odd, friendless and awkward.  He may have had a form of autism.  His home was filled with weapons capable of mass murder.  He had trouble in school.  His parents were divorced.  He was very smart.

None of these facts alone will ever explain why this tragedy occurred.  I’m not convinced that these facts combined can explain the tragedy either.

One thing that does not explain this violence or violence like it in Oregon, Colorado, Virginia, California, or any of the other sites of tragic mass murders, is autism.  Autism is not the enemy.  And we need to do a better job of educating the public about this disorder.

Let me begin here, today.

Autism is a disorder that makes life more difficult for the child and their families.  Connor is three and a half years old.  My son lacks the ability to self-calm, to self-regulate, or differentiate between needs and wants.  His language development is at least one year delayed.  His emotional development is also at least one year delayed.  He can be violent.  He pushes or shoves when he is angry or frustrated.  He cannot be reasoned with when angry.

Connor is also capable of both intense joy and sadness.  If he hears our dogs whimper, he asks them if they are ok.  He engages with other children on the playground but cannot communicate.  He longs to play baseball.  He watches the same movies over and over again.  He loves trains, trucks, and playing in the dirt.  My son loves making art and snuggling on the couch.  He cries if we wait in line for more than five minutes.  He will throw a tantrum in the middle of the grocery store because I didn’t get the right kind of bread.  He helps me unload the washer and dryer.  He puts his clothes in the hamper when directed.  He plays too rough with the dogs.  He ends up in time out at least once a day.  He tries to convince me he should have ice cream for dinner and cookies for breakfast.  He wants to go to the beach every day.

Connor is all these things and many more.  He is autistic.  He also a typical little boy in many ways.

Autism is not the enemy.

Please visit Autism Speaks for more information about Autism Spectrum Disorder and how you can help.



Turning a Corner

Connor seems to have turned a corner in his life.  Or perhaps we’ve turned a corner in OUR lives.

After constantly battling my son over nearly everything since he was old enough to move on his own, I find myself with a mostly compliant child.  I ask him to clean up his messes and he does.  I ask him to sit in his seat, and he does.  I ask him to stay inside and he does!  Sometimes he even does things without me asking, like cleaning up spills, or getting in bed.  And honestly it freaks me out!

Where has my angry, defiant child gone?

Connor happily leaves me to accompany the various adults that rule his life: teachers, coaches, therapists, instructors.  He suddenly loves them all!

Obviously Connor is still a 3-year-old pain in the butt, sometimes.  He still wants his own way, on his own terms, in his own time.  He still wants to sleep in.  He still torments the dogs by pulling their tails.  He refuses fruits in favor of bread.  He loves Cars 2 to the point of obsession.  And though I’ve never been the parent to an average child, I feel like this is pretty average behavior for a precocious preschooler.  (Yes?  No?)

Sure Connor still tantrums in public.  Sure he threw my tomato plant into the hydrangea just yesterday.  And yes, sure he’s resisting potty training with all his might.  But if taken in the context of an average childhood, instead of an autistic childhood, I feel like I could safely label my son as a stinker, rather than worrying about whether each incident indicated some underlying behavioral issue.

We are absolutely a long way from mainstreaming.  We have miles to go on the communication issues, eye contact, and peer interaction. We have setbacks.  We have days of bad behavior.  We have regression when Connor is sick or extremely tired.  We have power struggles and I still want to pull my hair out nearly every day (but what mother of a preschooler doesn’t?).  We still have challenges ahead.

But it makes my heart glad to see the progress we’ve made.  And I can confidently say that for the first time in his short life, I have a happy child.


Connor struggles with choices. For many of us it can be difficult to decide which car to purchase, or whether to accept the terms of a new contract.  We can vacillate over whether to wear the blue shirt or the red sweater, whether to get the chicken or the steak, whether we really want that third glass of wine (we do).  On some days it might be a challenge to just decide what we want for breakfast!

Now imagine that every decision of every day was that difficult.  It would be easy to fall into a pattern of eating the same thing, watching the same videos, wearing the same shoes everyday to avoid making any decisions.  You could feel confident about your life because you knew what the day was going to bring: the same thing it brought yesterday.

The other obstacle Connor faces in making new choices is that he struggles to communicate that new choice.  With his limited vocabulary it is much easier to say “goldfish”, which he’s said a thousand times before, than it is to learn a new word and then have to call it up on command to label your new choice.

To get Connor away from his rut, and to aid him in his communication, I made him a choice board.  A choice board is a visual display off all choices available, usually with written labels of the picture.

To get him comfortable with the idea of using the choice board to communicate, I decided to start off with food choices.  Connor only eats a limited number of items, nearly all toddler/preschool favorites, to be found on any kids menu in the country.

Despite the fact that there were only a few items to choose from, Connor still struggled to communicate what he wanted on a given day.  I would literally have to go through the list of food and ask him if he wanted each item.

“Do you want pizza? No

“Do you want chicken? No”

“Do you want a hot dog? No mommy!!”

“Do you want a grilled cheese? WAAAAAAAAAAAAAHHHHHHH!!!!”

Not fun.

Connor definitely had a limit on the number of questions you could ask him before falling apart.  I can’t imagine how frustrating it is to know what you want and be unable to communicate that.

The choice board has been a pleasant change.

Initially Connor didn’t want to use the choice board.  He tore it all down…twice.

But after allowing him to pick anything he wanted from the board and get it, the choice board has produced positive results.  This is a typical conditioning technique.  The positive reinforcement ties the child to the exercise, building good feelings towards the outcome of the choice board, allowing for more rules to be inserted later, as the child grows accustomed to the board.  So yes, this meant that I made biscuits every morning four mornings in a row, and yes, Connor got ice cream for dinner one night.  But here we are, two weeks later, and if Connor is struggling to communicate something, he happily goes to the choice board.

I used Google Images to find icons of familiar and preferred items.  I then printed them out and laminated them.  So yeah, I got to use my laminator!  And then I got to use my label maker!!  (It was a pretty awesome day.)

Initially the idea was that Connor would choose what he wanted for each meal and place the icon there.  Yeah….so that didn’t work.  For now, I have reorganized all the food under each meal and Connor simply needs to point to the item he wants.  I then require him to state out loud “I want _______”.  It’s been a process, but it’s working.

We’ll see if it lasts!  If it does, we’ll use a choice board for activities.  Perhaps I’ll even get Connor to help me plan his food for lunch!

One day at a time!

If you’d like to build your own choice board, here is a great link from Hands in Autism:

This is a pdf document that provides instructions as well as sample icons to use on your choice board.

As always, if you have any questions or suggestions, I’d love to talk about it!

Care Packages

If raising a child with autism is a war, then all the support I received from friends and family yesterday felt like letters from home.  Though they can never completely remove me from the situation, they can lessen the stress with every kind word.

A couple of comments and texts I received yesterday got me wondering about other parents of autistic children and their struggles.  According to the brief research I did, we are a subject group of considerable interest to researchers.  I came across several scholarly articles discussing the stress levels among parents of autistic children as being significantly higher than those of parents of “average” children. Many of these articles offer an analysis and advice of family, therapeutic and parent intervention.

There are also several support groups online and nonprofit groups that deal with the parents of autistic children specifically, offering them advice on how to cope with the stress and better ways of communicating with their children.

Perhaps I’m alone in this but when I read these support groups websites and all these articles, it just makes me feel worse.  I am giving all I can give on a regular basis.  Many of these sites offer advice on how to do things “better” which means I’m doing something incorrectly, which then spins me into a guilt tornado.  Ugh.  No thanks.

I prefer the care packages I receive from friends and loved ones.  I prefer the simple words of kindness and encouragement.  It’s nice to hear from other parents dealing with similar issues, or have dealt with similar issues, or parents of normally developed children whose kids do something infuriating!

If you’re unsure how to support me (or any parent of an autistic child) here is a nice article I found that offers a thoughtful discussion of what to say, how to say, and what questions to ask.  I know many of us, myself included, often worry about saying the wrong thing.  When you’re talking about someone’s kid, that worry can build to the point that you don’t want to say anything.

What to Say to Parents of Children with Autism by Jean Winegardner at the Washington Times.

Parenting a child with autism can be incredibly isolating for many reasons.

It’s difficult to take Connor out to public places for fear of how he’ll behave.  He may tantrum, shove other children, run away from me, monopolize toys/books/games, etc.  Or he might simply scream the whole time.  We were at Disneyland just a couple of weeks ago and while he had fun for the first hour, he slowly lost the ability to control his emotions and began to tantrum at the drop of a hat.  Every rule we’d worked on, every communication we’d developed, every peer interaction we’d practiced, went right out the window.  He hit me, pushed two unknown children, ran into an employee only area, tantrumed the entire time we were on the train.  Good times. But there are other times we’ve been there when he didn’t cry at all, interacted appropriately, waited his turn, etc.  It’s a very dangerous guessing game to play as to which behavior you’re going to get.  And as the parent you need to be prepared for the worst.  And you need to be prepared to leave any place, at any time, without any notice.

Sometimes that’s just all too much.  Sometimes I prefer to take him to a park that I know will be empty.  Or we’ll go for a walk on the vast wetlands with no one else around.  And sometimes even that is too much, and we’ll just stay home. When we have days like the past few days, I feel like a prisoner (or maybe the warden) in my own home.  This is Connor’s comfort zone.  Honestly, this is my comfort zone as well.  There is nothing that can happen at home that I am not prepared for.  We can be in the same room, interacting, or we can not.  Either way is fine.

So when I get your text, your email, your comment, it’s like a lifeline to the outside world that I’m not quite so alone as I feel sometimes.  Thank you for reminding me that I have friends, family, kind strangers, who care enough to share a moment of life.  Thank you for keeping me company if only for a minute.  Thank you.

And because I’m a woman who likes nice things, when I got an email from Coach yesterday offering me 25% off my purchase, I knew it was a sign from God that he wanted me to have something nice.  So thank you Lord.  I can’t wait for my care package from Coach!

If I’m going to have a child that drives me crazy, I’m at least going to look good on my road to insanity.

Video Talk

One of Connor’s greatest joys in life is watching videos.  Lately he has literally been waking up and immediately requesting a specific movie (over the holiday weekend that movie was Ponyo).  Connor takes joy in picking out the videos, lining up all the video cases or discs so he could clearly see all of his options.

The majority of his choices consist of various Pixar movies, but we throw in some Disney and DreamWorks Animation for good measure.

This is what Connor did this morning when he got up.  You can see from the picture that he constructed a very clear layout in which he could view everything.  The fact that he lined these videos up in this way is just one example of his autism.  For some reason, children with ASD enjoy lining things up or “ordering” things.  Connor does this often with books or videos or his toys.  At other times he is happy to leave things in chaos.  There doesn’t seem to be any rhyme or reason to it.

However, Connor’s autism stands out most sharply when videos or movies are involved.  One of his biggest developmental stumbling blocks is that his speech has been slow to develop.

Initially Connor seemed to be on track with other kids his age.  His first word was “Hi” just before he turned one.  He started collecting more words over the following year, but by age two he’d stagnated at about 20 words.  Connor also seemed confused over how to communicate with me.  He often flew into rages and tantrums because he was so frustrated that I didn’t know what he wanted or needed.  It was like some horrific game of 20 questions.

Once we got into therapy, though, things began to turn around….slowly.

Connor began to acquire more words and eventually understood how to communicate his needs.  Finally by January of this year we had mastered small phrases.  By the time he turned 3 Connor was using phrases and short sentences, even occasionally using reflective pronouns.  He’d say “I jump!” or “I dance”. The first time he said that I wanted to cry.  I swept him up in a big hug and covered his face with kisses.  Connor probably thought I was insane but he seemed happy enough that he continued dancing when I put him down.

The therapists and I continued to work with him on stating his needs or wants in sentence form.  We encourage him to say things like “I want ________ please” or heck, I’m happy with “I want _________”.

The one thing that has stuck with Connor in all of this therapy is “please” and “thank you”, although people are so delighted by how polite he is that he often gets away with using only phrases ending in “please” rather than being forced to say an entire sentence.

Throughout all of this Connor has been engaging in “video talk”, otherwise known as echolalia (which means to echo back).  He watches movies or YouTube videos over and over until he’s memorized certain phrases. He would repeat phrases over and over to himself, as if replaying a piece of the movie on his own. Initially I wanted to discourage this behavior, thinking that this type of speech would only slow his development down.

But then something interesting happened.

In the movie Up (one of Connor’s favorites) the character Russel asks the giant bird, whom he has named Kevin, if he is ok after their floating house bumped into a tree (I know this sounds bizarre but it makes sense if you see the movie, which I recommend you do). Russel says “Are you ok, Kevin?”

This simple question became one of Connor’s favorite phrases to repeat.  As with most of his echolalia, I’d gotten used to ignoring it.  At least I did until Connor asked me “You ok, Mom?”

“What, baby?”

Connor looked at me blank faced and repeated the question, “You ok, Mom?”

“Yes, baby, I’m good.  Thanks.  Are you ok?”

He didn’t answer but Connor seemed pleased with this response.  He smiled and then asked each of the dogs if they were ok.  They didn’t respond of course but that didn’t seem to bother Connor since he doesn’t place a high priority on language.

Like many articles I’d read about echolalia suggested, Connor was using the memorized phrases to create meaningful language.

It’s as if he is a little anthropologist studying our society and culture through vidoes, trying to make sense of our complicated language.  It’s bizarre sometimes but he’s learned a lot about feelings from watching videos of babies on YouTube.  He’ll see a baby cry and say “oooooh poor baby” or when a child laughs at a piece of paper ripping Connor laughs as well.  He’ll usually look to me to see if this is the appropriate response to what is happening.  If it is correct I’ll mimic him or if it isn’t I’ll display the appropriate emotion.

We seem to be making progress.

One day we’ll get to a point when Connor won’t use video talk to communicate or learn language, but right now it seems to be an invaluable tool.  Think of those stories you’ve heard of immigrants learning English by watching soap operas.  Some of their initial speech may contain words or phrases not ordinarily used in everyday language, but that fades away after a time.

For Connor he is learning language in exactly the same way.  He needs a means of communicating.  He has a hard time learning language from people around him.  The visual nature of movies and videos allows him to internalize the language and slowly adapt it to his life.

It must be a frustrating and arduous process for Connor to learn this way.

There are things I can do to help.

1) Be patient.

Speaking is incredibly frustrating for Connor.  The best thing I can do is to wait for him to express his language without rushing or prompting or losing my patience.  Eventually he’ll say it.  I might have to ask him five times and wait a full minute before he responds, but he will eventually respond.

2) Use his echolalia to my advantage.

If I ask him if he wants to go to the park and he responds “to the park” I know that he means yes and I know that he has all the appropriate words.  Instead of just accepting that as the answer, I prompt him to respond appropriately: “Say park please” or “Say I want park” or even “Say yes please”.  These instructions have been getting a lot of traction lately and Connor is able to answer questions more readily by having these memorized phrases available.  We’re finally getting a lot of “Yes please” and “No thank you”!  Also I can teach him new words everyday knowing that he’ll repeat me!

3) Remind him to use his words.

When your child is crying and upset it’s very easy to comfort him and remove whatever the problem is.  For Connor if he doesn’t want to do something his first reaction is screaming and/or crying.  This is not acceptable in the long-term.  It takes every ounce of my will power not to hug and kiss his tears away.  I force myself instead to stare at him placidly and remind him “use your words please”.  If that doesn’t do it, I know that he wants to say no so I prompt him saying, “Connor, say no thank you.” This usually gets an immediate response.  It offers him a way out.  “NO thank you!” he’ll shout, which is oh so pleasant, but at least it’s something.  Thankfully this message has been getting through to him so this weekend when he was extremely distressed about having to wear swim trunks to go swimming he repeated “No swimming, no thank you. No swimming, no thank you” until we got out of the water.  Sigh.  At least he’s communicating!

4) Don’t accept silence as an answer.

Seriously.  I believe that echolalia is better than silence.  It’s not a perfect solution, but it’s better than nothing.  I don’t want Connor to think it’s ok to ignore the speaker.  It’s not.  He has to learn to communicate in order to thrive in his world.  I can’t just let him be silent.


To be sure this will be a long, exhausting process.  But Connor has improved so much in all other areas over the last year that I have the utmost faith that he’ll improve in communication also.  Until then, I can take the video talk.  I’ll just ask him “Are you ok, Connor?” until I get an answer.

Anatomy of a sick day

Sadly I didn’t post yesterday because my child was home sick.  And though he spent the majority of his day behaving as if he felt perfectly fine, Connor seemed to need me close at hand.

It all began Wednesday afternoon…

At the school to pick up Connor from his preschool class,  I heard a wailing sound.  I knew that sound! It was Connor, crying and screaming as his teacher tried to put  his backpack on him.  Usually Connor loves to go home! But this was an early day, so maybe he was thrown off schedule.  Ok, well, we’ll roll with it.

His wonderful teacher, Mrs. S, explained that he had seemed tired and restless towards the end of class.  Odd, I thought, he slept a good 11 hours the night before, plus he’d been eating everything in sight for the last 48 hours (granted that was only if his favorite foods were in sight).  Maybe he was growing, which can be a tiring and sometimes painful process.

Off we went to the house, where we were met by Connor’s new after-school therapist.  As part of his ABA therapy program, Connor gets 8 hours of ABA at school and 4 hours at home.  Wednesday was his first in-home therapy session, the first time he’d worked extensively with this particular therapist.  I was prepared for some tantrums, or at least a little whining.

Connor surprised me by being friendly! He immediately engaged in cooperative play, as well as verbalizing on demand.  I thought, great! I’ll just go do some dishes in the kitchen.

That was a mistake! When will I ever learn??????  If something is going WELL don’t do anything to change the formula!!! Duh!  Rookie mistake, Erin!

Of course Connor devolved into a crying, clinging mess when I tried to leave the room.  Even after I’d sat on the ground with his therapist and become his living tissue, it still took 20 minutes for Connor to fully calm down.  Though that’s not atypical for children with autism to tantrum for extended periods of time since they often lack the ability to regulate their emotions or to self-soothe, Connor had improved so much recently in his self-regulating that 20 minutes straight was a long time for him.  I simply took it as another sign he was tired.

After therapy we spent the rest of the afternoon just playing outside with the garden hose, watching Toy Story and playing matching games on the iPad.  6 o’clock rolled around quickly enough, and since it was Wednesday (my night to go out) the sitter arrived and took over with minimal upset.  Returning from our dinner and a movie night, my boyfriend (TS) and I found Connor fast asleep.  We followed suit and quickly went to sleep ourselves.

THANK GOD TS had stayed over!

Around 3 am I hear crying and the sound of running feet.  Connor jumped into bed and snuggled up to me, attempting to sleep but pitifully whimpering.  I did all my normal soothing actions: stroking his hair, pulling him close and rubbing his back, whispering softly to him.  Nothing was working.  I noticed a wetness on his waist band.  I hoped it was merely that the diaper was overly full with pee pee.  But as the crying continued, I knew better.

Ok, up we went, into Connor’s room to change his diaper.  He begins fighting me tooth and nail, flailing in my arms, attempting to grab on to anything to stop progress towards that torturous changing pad.  I call for TS to come help me.  He jogs into the room, groggy but willing to help.

This poor man! He meets me, falls in love, and then gets to help me with my sick child at 3 in the morning.  And when I say help what I really mean is that he holds him in a hog tie position while I peel the contaminated clothing off my son then fight to wipe off the watery bowl movement, effectively covering my hands with poop.  Connor is of course screaming his head off as if he is being physically tortured because since he voided while he was sleeping it left him with a very violently red rash.  All this TS has the privilege to assist with.  He truly is one lucky guy.

The only solution was to get Connor into the bath to finish cleaning him and to help leach some of the inflammation out of the rash.  And despite the fact that the bath would be soothing Connor refused to get in.  In fact he refused to take his pajama top off.  So he’s literally standing in the ankle-deep bath water pants-less screaming, hot tears rolling down his face, while I try to coax him to sit.

Finally I give up trying to use reason and force Connor to sit in the water, holding him there by leaning into the rapidly filling bath, soaking myself.  At last Connor recognizes that his poor bottom actually feels better in the water.  He gives up screaming, but still clings to me.  Connor releases me little by little until it is just my hand in his, which he strokes over and over as if the rhythm of pressing my hands between his is calming to him.

We sit like this for a long time.  occasionally I’ll stroke his hair or whisper some soothing phrase.  Tears fall down his cheeks from time to time.

My patient, saintly TS who had stood calmly by, assisting where he could, hands over some children’s Tylenol and sets up Toy Story 2 for Connor to watch in the big bed with us.

After I’m sure the Tylenol has kicked in, we move him out of the bath and his wet pj top, letting his sleep in just a fresh diaper.  Connor crawls into bed, arranging pillows how he likes them, leaving TS and me with just half of the bed to share.  At last, sometime around 5:30 we drift off to sleep.

When TS leaves for work at 7:45 I call the school to report Connor’s absence.

We awake naturally and slowly around 10 am.  I expect my sickly child to be sad, whiny and clingy as he wakes to the world.  Instead, he immediately begins chattering.  He literally jumps up and on to the bed, jumping up and down as if he hadn’t a care in the world. Though only noticeable difference was that Connor didn’t want to eat much and he wanted me near him at all times.

We spent the rest of the day playing, running around, engaging in general silliness!